Community turns out to support man with rare disease

PLATTSBURGH Hundreds of people poured in and out of the doors at Olive Ridleys last Sunday to help a local man battling a degenerative disease. Friends and family of Randy Duprey and those who didnt even know him or his wife, Kate filled the downtown restaurant to show their support of his fight against scleroderma, an autoimmune disease which attacks a persons joints, skin, and organs. The turnout was more than what was expected by Kates mother, Brenda Munson, and Randys aunt, Melanie OConnell, who helped organize the event. Many of the people who attended the event admitted they had never met Randy or his family, but had simply read articles about Randys condition in the newspaper and were moved enough to make a contribution. A lot of people have come together in the community, said Mrs. Munson. Its touched my heart. I know its touched Melanies. Its just amazing the amount of people calling and dropping off checks. Weve been trying to keep track of whos making all See BENEFIT, page 25 Benefit From page 1 the donations but they keep coming through the door and handing us checks and we dont get some of their names, said Ms. OConnell. We have no clue who half of these people are. While many faces in the crowd were unfamiliar to them, one face was that of Kate and Randys pastor, the Rev. J. Roger McGuinness of St. Josephs Church in West Chazy. The Rev. McGuinness brought not only words of encouragement for Randy and Kates family, but a donation from the churchs parishioners as well. Im reminded of what one parishioner said about West Chazy people, said the Rev. McGuinness, and that was whether they know a person or not, if you ask them to help with something like this, they will do it. So, thats what we did. The Rev. McGuinness knew Kates family first, for several years. He later performed Randy and Kates wedding and their son Aleks baptism. After all that time knowing both families, it brought a smile to his face to see the community support such a great family, he said. This is good to see. Its a very, very good crowd, said the Rev. McGuinness. As he looked around the room, Alex J. Matich, director of development and fundraising for the Tri-state chapter of the Scleroderma Foundation, was also overwhelmed by the support Randy and Kate received during the benefit. Mr. Matich attended at the request of Randy and Kates family and brought with him a wealth of information about scleroderma to help educate those with questions. This is absolutely fabulous, said Mr. Matich. Raising awareness for a disease such as scleroderma is critical in furthering research, he added. Many hospitals, doctors, specialists at hospitals dont have a clue what scleroderma is, said Mr. Matich. It can take years to get correctly diagnosed, and even when you do, theres not much medication to treat the disease, mainly because drug companies cant afford to do the research. Throw in the fact there is very little government funding to research the disease which has no known cause or cure and the challenge becomes all the more difficult, said Mr. Matich. Statistically, scleroderma affects 1 out of 1,000 people. Estimating Clinton and Essex counties have a combined population of 100,000, said Mr. Matich, that means the possibility of more people with Randys condition are out there, but may not know it. That means theres probably 95, if not 100 other people like Randy out there with scleroderma, which is an unknown disease, said Mr. Matich. The disease can also affect different people in different ways, he said. One woman in Albany lived with scleroderma for more than 30 years, while another in Connecticut passed away after living 53 years with the disease. That significant accomplishment can be eclipsed, however, with cases where some have succumbed to its power in as little as a year. Every case is totally, totally different, said Mr. Matich. What is just as uncommon as Randys disease is the procedure which Randy is undergoing to take back control of his life. Randy was scheduled to begin a stem cell transplant at Duke University in North Carolina the Tuesday following the benefit. Chemotherapy he has undergone has essentially wiped his immune system out. It will be replaced with stem cells donated by his brother, Kevin. The eight-week process will likely be followed by several months of follow-up evaluations, said Mr. Matich, and is a procedure of which he has heard of only once before though that procedure was successful. There is a woman who went from within 72 hours of dying to five years later having no signs of [scleroderma] at all, said Mr. Matich. Now, you cant get any more positive than that. I cant say thats definitely going to happen for Randy, because we have no clue. The surgery itself is deadly and the recuperation is evidently very, very difficult. She is a success story without a doubt and we can only hope and pray the same thing happens for Randy. Those who could not make it to Randy Dupreys benefit may still show their support by arranging a donation through Mrs. Munson, 563-8392, or Ms. McConnell, 293-8572. Donations may also be made through PayPal at the Duprey familys blog, www.thedupreyfamily.blogspot.com.